Friday, December 30, 2011

It's hard to believe that 2012 is here! Where has the time gone? All this focus on a New Year and a new start has got me wondering, 'Did I accomplish my New Year's resolution for 2011?'

My 2011 Goal: Finding My Sweet Spot

I set out this past year on a Mission 2011 to see if I could find my "sweet spot." I defined the sweet spot as a state of energy use would leave me with a little bit of energy remaining at the end of each day. That extra leftover energy would get banked and create an energy reserve.

The concept behind this goal was simple: banked energy would be used by my body to heal. Healing would allow me to expand my energy envelope, the boundary within which I operate on a daily basis: the fine line between functioning and flaring up.

So in theory, finding the sweet spot meant finding the method by which I could get "better," with "better" being defined as the ability to do more while still successfully managing the symptoms of my fibromyalgia and chronic pain disorders.

Where I Started

At the beginning of the year, I thought that examining different aspects of my chronic illness self-management might reveal areas that needed improvement. From there, I figured if I fine-tuned my coping strategies I would be closer to finding and living in my sweet spot.

So I began by reviewing topics like planning, social support, routine, meditation, exercise, mindset, special events, using forms to track symptoms and body mechanics...

The Road I Traveled

Then I hit a really rough patch: a series of stressful events beginning in March. By May I was getting buried and thrown off track with my Mission 2011 review process. I also started making plans to schedule several medical procedures (which I wrote about in my post Mission 2011: Happiness is Having a Plan.) Along the way, I came to realize that having carpal tunnel surgery on both hands and preparing for Hepatitis C treatment were not compatible with my year-long goal.

For all practical purposes, I put my Mission 2011 on hold while I focused my efforts on using all my coping strategies to maintain my status quo and avert flare-ups during the second half of 2011. Switching gears into defensive mode, I learned that I do have the ability to keep my symptoms under pretty good control in the face of difficult circumstances. Despite all the stress, I avoided a major flare-up in 2011 by pacing, planning, resting, asking for help, delegating, saying no and making sure I had fun too.

Unfortunately, there were many days when successful coping meant using all the energy at my disposal to maintain homeostasis. This is not a strategy compatible with banking energy and discovering my sweet spot!

Lessons Learned

So I learned to find my sweet spot I need a stretch of time where I get a
break from major stressors like surgery, financial problems and the big
annoyances and irritations in life. You know, a period of
relative calm in my life.

Despite the mid-year change in course, I am proud of myself for setting this goal and actively pursue it. For the topics I did review, I discovered that I was consistently implementing many of the self-help strategies I learned. I am also proud to say that I wrote 26 blog posts in support of this goal. Along the way, these are the things that I learned about setting a year-long goal:

The only way to learn and grow is to challenge yourself.

You won't know if you can accomplish a goal if you don't get started working towards it.

Every attempt to better yourself moves you closer to a new-and-improved you.

Even if you don't accomplish your goal, you will gain invaluable knowledge and insights along the way.

Reviewing your progress (or lack thereof) helps uncover feedback that you can use to be more successful next time.

Fortunately, I can see the light at the end of the tunnel here in 2012. I'd love to say that everything got resolved, but most things did and the rest is tying up a lot of loose ends during this year. The really good news is everything worked out in the end, and that's really all I can ask the Universe to do for me.

As for connecting my goal with my blog, I have to say that I really enjoying the challenge and the built-in accountability. Having a meaty weekly blog topic to write about worked for me. I still find myself thinking about posts I want to write in support of Mission 2011, so I plan to continue the review of my self-help strategies into 2012 and beyond.

I also see that by choosing to treat my Hepatitis C in 2012, things are going to continue along the path of upheaval for another whole new year. So fasten your seatbelts because 2012 is going to be a bumpy ride.

In closing, I'd like to share a random sampling of my Mission 2011 posts below courtesy of the Zemanta widget. You can find them all by clicking the Mission 2011 link here or in the right sidebar under My Blog Topics.

Thursday, December 29, 2011

I thought I was being very practical, heading out with my hubby the Friday before Christmas to run some errands. He was walking and I accompanied him on my mobility scooter. We made it an event, taking the dogs with us so they could get out of the house too and join us for some fresh air and sunshine.

Seems innocent enough, right?

Except I literally ran into problems with the roads and sidewalks being filled with more potholes and hazards than I ever encountered before. There was one decidedly panicked moment when I had no choice but drive into a rather large pothole that spanned the width of the crosswalk to get to the curb in front of me: the scooter stalled, the motor turned off and there were mere seconds left before the traffic light turned red and cars were going to start coming at me. I got out in time, but it was a jarring experience.

Again, I didn't think much of it. I mean, heading out in my scooter means navigating all sorts of road hazards, from crazy drivers who aren't paying attention to where they are going, and don't see me, to sidewalks deformed by tree roots making them impassable. I'm always glad when Robert is with me, acting as my extra pair of eyes to help spot the problems before I get into trouble.

Unfortunately, it was too much of a wild ride for my body to handle.

By the time I got home, I was feeling some serious low back pain and I admit it completely caught me by surprise. Then I foolishly compounded the problem by heading out again, this time by car, to run a few last minute errands that we weren't able to complete on the earlier trip.

I was in bad shape when I finally got back home.

Ever since the 23rd, I've been experiencing a huge amount of pain in my low back and left hip. It wasn't enough to stop me from going to my in-laws for Christmas dinner, but I needed to take my flare-up drugs, wear a compression garment and use an ice pack to do it. Even then, the pain I felt with sitting, walking, standing, bending, etc. really distracted me from truly enjoying myself.

Bah humbug!

Now I am pretty sure this is just one of my fibromyalgia flare-ups. But yesterday I started thinking that maybe I needed to get checked out because the pain is really lingering despite all my efforts to quell it. Problem is, the doctors I would want to see have decided to take the week between Christmas and New Year's off, so there is no one available that might be able to help.

That leaves going to an Urgent Care or Emergency Room, which for fibromyalgia pain is never really a good idea because the doctors there have no idea how to help me.

So here I am, squirming in pain, irritable, grumpy, distracted, more sleep-deprived than usual and barely able to write this blog post. I'm living through this flare-up and I still can't believe something as trivial as a bumpy ride on my scooter can cause so much pain. I can't believe I am so fragile that a pothole can send me into a world of hurt. I mean, how crazy is that?

Most of all, I am sad because this was going to be a new thing for me and my hubs to do every weekend, together, with our dogs: "walk" to run errands in our local neighborhood. Right now, it's looking like the "mean streets" of West Los Angeles have put the kibosh on this plan, well, unless I can get an upgraded scooter with a souped up off-road suspension.

Can you imagine what that might look like? Or how much it would cost?!?

Good grief! I Googled and found this one for only $4.985.00!

Oh well, it's too late to ask Santa for one this year. Perhaps he'll give me one next year...

In the meantime, I could use some healing thoughts sent my way. (Or maybe some better pain drugs if you can spare a few.)

Thursday, December 22, 2011

Oh, to go shopping at the mall! I don't have to tell you it's that time of year again...or what a workout it can be if you live with chronic illness.

But who knew, every once in a while, pretty pink surprises happen, when you least expect them, at the mall?

I discovered a viral holiday video yesterday and wanted to share it will you.

I really enjoyed watching this video and I hope you will also.

I also made an interesting observation and felt some real appreciation for the creative minds behind the scenes while I was viewing it. You see, I absolutely LOVED how the producers of this video included women of all shapes, sizes, ages and colors in this video. I even watched to see if the dancers included some buxom beauties and was pleasantly surprised to see them as part of the troupe too.

As a plus size woman, I have to say that this video really helped me feel good about myself AND the holidays, because going to the mall to find clothes that fit when you are ample can often be a very frustrating experience.

So when I see something in the media that celebrates women AS THEY ARE I am so grateful. Images like these go a long way to counteract the tendency to feel bad about ourselves when we don't meet the unrealistic and unattainable standard of female beauty set in the media.

So kudos to T-Mobile for serving up a pretty pink holiday surprise at the mall that helps all women feel comfortable about their bodies. I have to say this was a really special holiday gift.

By the way, the video was filmed at the Woodfield Mall in Schaumburg, Illinois. You can read more about the making of this video at the ChicagoNow website.

Friday, December 16, 2011

I cry because I am a living example of what it means to have less cancer and more birthdays: 24 more birthdays to be exact!

It's hard to believe it's been over 23 years since I heard the words, "You have leukemia." It's hard to believe it's been 18 years since I passed the 5 year mark and my cancer was considered "cured." Plus this past year I hit another milestone: I have lived more of my life as a cancer survivor than I have lived before my cancer diagnosis. Now that is pretty remarkable.

I am also crying because, right off the top of my head, I know of four wonderful people whose lives are being impacted by a cancer diagnosis today.

One is a girlfriend with lung cancer, who is benefiting from an amazing breakthrough drug called crizotinib (Xalkori). This drug is a true miracle for a small number of lung cancer patients, stopping cancer in its tracks and allowing patients to live with lung cancer as a chronic, but manageable, illness. As often as I can, I send her greeting cards filled with words of encouragement, hope and support, just like someone did for me when I was going through my cancer treatment.

The second is a brave young woman with recurrent breast cancer. We "met" through a mutual friend on Facebook and she blogs over at Starting Over: My Journey with Cancer. Not a day goes by that I don't send a silent prayer her way hoping that she gets to celebrate 23 birthdays past her cancer diagnosis like I have.

The third is a mature female friend who was also diagnosed with breast cancer. She talked to me before her surgery and I gave her my "If I can beat this, you can beat this too." pep talk. Thank goodness the surgery was successful in removed all the cancerous cells. Two years later she is doing well and still cancer-free. Being over 50, regular mammography was instrumental in catching her cancer early.

Finally, I just learned yesterday that one of my aunts is in hospice care, dying from advanced lung cancer. Her husband, my dad's brother, died a few years back from lung cancer. Their tragedy involves cigarette smoking, which causes approximately 443,000 deaths each year, 49,400 of those from exposure to secondhand smoke.

Then there are all the people I have known who have lost their battles with cancer and are no longer here with me today. I hold them with fond memories and great care in my heart, always. Among them is my mother, who died from advanced colon cancer at the age of 61 in 1999.

Watch this video to learn more about all the ways that the American Cancer Society helps to prevent cancer, fund reasearch and support patients going through treatment.

Tuesday, December 13, 2011

"All sunny skies would be too bright,
all morning hours mean too much light,
all laughing days too gay a strain;
there must be clouds, and night, and rain,
and shut-in days,
to make us see the beauty of life's tapestry!"

~Unknown

So I have a friend who is a fitness blogger. She recently wrote a post about staying in shape during the holidays, with tips to counteract the parade of food that happens this time of year. She made a really good point about switching the focus and making the holidays about people, not food. I think we can all agree with that...

So in the pursuit of making the holidays more about people, one of her suggestions was to visit a shut-in during the holidays.

When I read this, I got a little excited. I thought maybe she would be taking her own good advice and calling me to schedule a long overdue visit. Thing is, the call hasn't come and I am feeling a little disappointed.

Then it hit me: maybe she doesn't think I am a shut-in!

Now, to be honest, I don't like thinking of myself as a shut-in either, but I looked up the definition and, sure enough, I meet the criteria:

Before I move one, I want to make it clear: being a shut-in is not something I ever thought I would be. Then again, I didn't aspire to be a sick chick either. That said, if I have to be a shut-in, perhaps I should embrace being a Shut-In Princess (just with a different ending...)

I am a shut-in because of the chronic and severe symptoms of my illnesses. Without copious amounts of help, I can't really leave the house on my own. I need assistance to go to the grocery store, get to my doctor's appointments and travel anywhere outside of a five mile radius around my house. And I have learned from experience that even if I feel good enough to go out, it doesn't mean I'll have the energy to get myself back home.

Perhaps my biggest concern is my sleep disorders and how they make me sleep-deprived during the AM hours. In fact, I am as dangerous as a drunk driver when I am sleep-deprived and behind the wheel. So I choose to cancel appointments on days I don't get enough sleep.

Now maybe my friend has a narrow view of who is a shut-in. After all, the term is usually associated with older people, and I'm not old--yet! Too bad I'm not friends with Elizabeth. She is from the South, where they have a little broader view of what a shut-in is and know shut-ins have a desperate need for casseroles. (Read Casseroles, Shut-ins and Feminism for a good chuckle.)

Can I also say that there is a real lack of services available to me that could make the difference between being shut-in and living large? The main one is disabled-friendly transportation. Sure, I used to have access to County para-transit services, but they changed their eligibility criteria and cut me off (most probably due to budget shortfalls.) Then there is Robin who is the Medicare Shut In because MediCare won't pay for a power chair to help her get out of the house. Which leaves me scratching my head and asking 'How does this make any sense?!?'

So what about you? Are you a shut-in too? Plus I'd love to hear any nifty substitutes for the word shut-in you might have, because while the word shut-in is technically correct, isn't very sick chick friendly.

Friday, December 9, 2011

I think having chemotherapy 23 years ago was enough to make all my veins go into hiding.

Needless to say, it makes getting blood out of me about as easy as, well, getting blood out of a stone. That is, if you, Mr. Phlebotomist or Ms. Doctor, are looking to SEE a vein in my arm. They are there (I am breathing and talking to you, right?) but you have to FEEL for them and KNOW your anatomy to find them.

They did teach you about anatomy and feeling for veins in phlebotomy class, right?

You know things aren't right when you are giving a pep talk to the person drawing your blood: "You can do it. They are there, you just have to feel for them. You draw blood all the time, this will be a piece of cake for you. Let me show you here on my arm where they draw blood from me all the time."

I swear it took TWO anesthesiology residents and FIVE tries before they finally got an IV into my left hand/wrist area before my recent carpal tunnel surgery.

I must have been OUT OF MY MIND to let them keep poking away at me like that. What was I thinking? I should have benched the residents and made the attending doctor start the IV after two failed attempts. No wondering I discovered bruises everywhere on my left hand and wrist when I took my bandage off last last Sunday.

It's almost incentive to dabble in some of my own do-it-yourself phlebotomy training...

Not to Proud to Beg For Your Nomination

We all like to get a little recognition for the things we do well.

I talk about being a health advocate. I'm not sure how much health advocacy my chronic illnesses really allow me do, but I try to jump at every "advocate from home" opportunity presented to me, like writing blog posts here and promoting good causes via Twitter and Facebook. So when I saw a recent email from WEGOHealth asking for nominations for their Health Activists Awards, I hear myself say to myself "Wow, I'd sure would like one!"

Here is the thing: I need you to nominate me. But let me make it easy for you! I think I found the appropriate category for me:

They may fly under the radar, but this Health Activist is a star. They aren’t featured on every top 10 list on the web, or overflowing with followers, “friends,” and audience members. But they should be. They are an amazing example of what a Health Activist is. They are an expert communicator, leader, and have so many of the qualities we admire. Who do you love to read and wish could you be friends with? This is their time to shine. When someone’s this great – you want everyone to know.

Tuesday, December 6, 2011

If you're like me and you're living with chronic Hepatitis C infection, you may be sitting on the fence when it comes to moving forward with treatment.

After all, undergoing treatment is no small thing, especially if you've been diagnosed with genotype 1 of the virus.

Conventional treatment requires a commitment of no less than 48 weeks with pegylated interferon and ribavirin. Then there are the numerous side effects, ranging from mild to moderate, that for some people can be a really big problem. Factor in the cost, the disruption to daily life and the possibility of needing to take sick time away from work and other important commitments, and choosing to move forward with treatment might not seem like such a good idea.

After all, the odds are in our favor that we will die from something other than Hepatitis C if we choose to do nothing.

But with the Federal Drug Administration (FDA) approval of two new direct acting antiviral (DAA) medications this past May, Hepatitis C treatment is starting to look a whole lot different. Some of the benefits include treatment time being cut in half to a much more manageable 24 weeks. Plus doctors have new tools to tailor treatment to each individual patient. These new treatments also come with the risk that the virus could become resistant to the medicine if it is not taken properly, as well as some new medication side effects.

I finished reading her book over the weekend and I highly recommend it to people living with Hepatitis C and their caregivers. Ms. Porter's book reads like a warm and caring pep talk. Her words were exactly what I needed to hear at this moment, as I find myself anticipating the start of my own Hepatitis C treatment at the beginning of 2012. She helped me put into perspective my choice to move forward and allowed me to let go of my fears and anxieties about making it through treatment.

In addition to providing basic information about Hepatitis C infection and an overview of the new treatment regiment that now includes DAAs, the main focus of the book is solid advice about how to successfully approach treatment. It covers topics like managing physical and psychological side effects, following your drug protocol and talking to your medical provider about treatment. It also provides strategies for managing your work life, personal life and finding the support you need to bolster you through treatment. There is even an entire chapter devoted to what to do when your Hepatitis C treatment is over, information I hadn't encountered before but I am so grateful to have now.

As a nurse who has helped patients get through treatment, as well as being a person who lives with Hepatitis C herself and has gone through treatment, Ms. Porter's book is filled with encouraging stories and helpful insights that make this more than just a health reference book. She helps the reader see Hepatitis C treatment as a journey that can help heal body, mind and spirit. She truly believes that the experience has numerous benefits besides just obtaining a SVR, a.k.a. a cure. After reading her book, I agree.

This book will be my companion through my own Hepatitis C treatment. With so much good advice, I can see myself referring back to this book time and again to answer specific questions, review coping strategies and gently remind myself of why making the choice to treat my Hepatitis C is both important and worthwhile.

The experience of reading this book also helped me get back in touch with my appreciation for nurses. During my cancer treatment, it was the nurses that took care of me when I was in the hospital that really helped me get through my treatments. I have found that same kind of support fills the pages of Ms. Porter's book.

Monday, December 5, 2011

I have been listening to Christmas songs on Pandora radio lately to get myself into the holiday mood. One song I keep hearing over and over is "My Grown-Up Christmas Wish." That song got me thinking about what I really need this holiday season.

With my plan for the New Year in my sights, my grown-up Christmas wish this year is for courage and determination.

You see, I am embarking on a tough journey in 2012: treating my chronic Hepatitis C infection. To do this, I am going to need all the physical, mental and spiritual fortitude I can muster. I'll need lots of support too.

Treatment will be 24 weeks of weekly interferon injections and multiple daily doses of anti-viral pills--ribaviran twice a day and a direct acting antiviral (DAA) three times a day. There are lots of potential side effects, from flu-like symptoms, fevers and chills, to nausea, fatigue, rash, irritability and even depression. I already know that some of these side effects will make the symptoms of some of my pre-existing chronic illness worse and that worries me. Plus treatment might be extended beyond 24 weeks depending the results of blood work taken at week twelve.

Then, once I am done, I'll need six months to recover, time I'll also spend waiting to see if the treatment was successful.

I tried doing treatment back in 2007, and three weeks in, I experienced so many side effects that I stopped. Looking back on that horrible experience, I realized that I failed because I didn't have the support of a medical team that was actively addressing my side effects. Since then, I've gone to great lengths to put together a team that I thank can help me get through Hep C treatment successfully.

Thankfully I also discovered a new book written by Lucinda Porter, RN called Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C. I read it over the weekend and plan to review it for you in-depth tomorrow. Let me say that her book put my choice to treat my Hep C into a perspective that helps me let go of my fears and anxieties about treatment.

As someone who is managing multiple chronic illnesses, I feel compelled to try and treat the one health condition that could possibly be cured: my chronic Hep C infection. It's not going to be an easy fight, but I think it is my best shot to prevent some pretty scary complications down the road. Plus I really hope that decreasing my chronic illness burden will have positive benefits in the long run.

I really need to do this. The longer I wait, the harder it will be to get the outcome that I desire. So really, I have nothing to lose trying treatment again...and everything to gain if I am successful.

So what about you? What are you wishing for this holiday season? Do you have a grown-up Christmas wish you'd like to share with me?

Before I can talk about my motivation for writing and the benefits that I have received from it, I need to talk about the actual physical act of writing, because chronic illness doesn't make getting words onto paper or a computer screen easy for me.

I am plagued with constant pain that travels from my neck down my arms and into my hands. When I use my hands too much, the pain travels from my hands up my arms to my neck. It's quite a vicious circular cycle. This constant pain prevents me from using a pen and writing on paper for more than a few lines. It also prevents me from typing on a keyboard for more than the few minutes. Since this is the traditional way that writers practice their craft, the first hurdle to overcome in my pursuit of writing has been finding alternative ways to write.

Using a speech-to-text program, specifically the computer program Dragon NaturallySpeaking, has been the solution for me.

That said, there is something almost unnatural about speaking out loud to write. For starters, I am embarrassed to do it in front of other people and worry about being overheard while I am in the process of "writing." After all, in my mind, writing is about being quiet, not talking.

I've also had a really hard time disconnecting the use of my hands from writing. In the past, writing flowed from my brain out into my fingers; the greatest challenge was getting the words typed quickly enough as they spilled out of my thoughts. Now my writing comes out of my mouth and there is a censorship that happens along this route: a process we all engage in when we have a conversation with another person. It's been challenging to just let the words flow out of my mouth when I am "writing."

Of course there's also the issue of technology interfering with the writing process. Speech-to-text programs need to be trained, and even then they can't always figure out what you're saying. Occasionally, they go rogue and start typing sentences that makes absolutely no sense what-so-ever. On occasion, I've had to postpone my writing and turn my computer off because I couldn't get the technology to cooperate.

Shedding Loneliness

I admit I wasn't much of a writer before I became chronically ill. I mean, sure, I wrote a lot of reports and grant proposals as part of my job as a social work administrator. And I occasionally attempted to keep a personal journal. But the truth of the matter is I never really had the time to devote to writing in any meaningful way because I was so busy with so many other things. Which was really quite too bad, since I always had the inkling somewhere in the back of my mind that I would really like to try taking a stab at writing a book.

So how ironic is it that one of the true gifts that chronic illnesses has given me is copious amounts of time which I can apply to the pursuit of writing?

Granted, it took some time to figure out how I could physically write after I became chronically ill. Then once I got that down, the Universe nudged me in the direction of blogging through my friend Cyndi. Like me, she experienced that inkling to write but could never find the time between work and all the other things competing for her time. After a shared conversation about the topic, she suggested that a friendly competition might get us both started writing in earnest.

Hence was born the "Blog a Day in the Month of May" challenge in May of 2009. And the rest, as they say, is history.

Over to the past two years, as I have consistently written and posted to my blog, I have succeeded in connecting with many other people living with chronic illness like me. The act of writing and then sharing my writing with the world has truly helped me shed some of my loneliness. In fact, writing my blog posts has become the focal point of my day during the "work" week. It has become so important to me that if I miss a day due to my illness or events beyond my control, I feel a little sad, lost and ungrounded.

I've enjoyed writing so much that I actually started writing a second blog called The Seated Gardener where I share my passion for container gardening, another gift given to me by chronic illness. Not to mention all the blog carnivals I participate in, other sites I guest post at and the social media places I participate in related to my blogging efforts.

Beyond Chronic Illness

All writers have to start somewhere and often the easiest place to start is writing about yourself. Surprisingly, living with chronic illness gives me a lot of writing material. Now that I have an established writing routine, I rarely find myself at a loss for a topic to write about as my ongoing adventure in learning how to live my best life despite chronic illness somehow always presents me with new challenges, discoveries and situations that lend themselves to blogging.

But I am finding that the more I write, the more I find myself drawn to trying out other genres of writing too.

One of the writing challenges I have yet to accomplish is NaNoWriMo: National Novel Writing Month. NaNoWriMo challenges participants to write 50,000 words during the month of November and bills itself as a novel starting exercise that can help you write your first book. The official NaNoWriMo event, filled with pep talks, support groups, online forums and badges, takes place every November, although anyone can choose to complete the challenge any month during the year.

I attempted NaNoWriMo in 2009 but was hampered by my physical limitations to writing and my uncooperative technology. I'm not sure why I didn't attempted it in 2010. I chose not to try it this year since I was in the midst of getting carpal tunnel surgery done on both of my hands--one at a time of course.

What I do know is that since the seed of NaNoWriMo was planted in my brain in 2009, the Universe has deposited within me four intriguing science fiction story ideas that I feel compelled to explore and develop. What these ideas will turn into, I'm not quite sure. But perhaps it is time for me to start living my life vicariously through characters of my creation! Then I could ditch the chronically ill body that is holding me back from experiencing real-life and explore a realm where chronic illness can't hold me back. (Well, at least not as much as it does in reality!)

So now that I have the interest and motivation, maybe it's time to figure out how to remove these new roadblocks to writing longer pieces of work. Perhaps the key to completing this challenge successfully is modifying it so it is more doable for me, which might mean writing 50,000 words in 60 to 90 days instead of 30. Whatever it is, I'm going to figure it out and of course share it with you here on my blog.

Tuesday, November 29, 2011

I'm back from the long holiday weekend, a weekend which I both enjoyed and overdid it with too much activity. The over-activity resulted in my quest to get a whole bunch of things done before I go back for round two of carpal tunnel surgery November 30...which is tomorrow!

So before I become inconvenienced by the restricted use of my left hand, I wanted to get these things done:

bed linens changed

cat litter boxes changed out

dogs bathed

outdoor holiday lights put up

homemade gift for a holiday gift exchange completed and ready for mailing

The good news is that I got these things all done, several with lots of help from my hubby. The bad news is that I paying for it now. And, of course, I can't take my usual non-steroidal anti-inflammatory medications right now since I am in a seven day lockout period leading up to my surgery.

Ho hum!

So my mini flare-up, pre-surgery anxiety and the upcoming holidays have got me feeling quite frazzled. But then listening to Christmas music over the few past days got me thinking about my comforts and joys. You know, those little things we do for ourselves that help calm us down, soothe us and create a time-out from our chaotic lives.

Which is a good thing right now, since I could use all the comfort and joy I can get to help me get through the next several days.

One of my favorite go-tos is a warm cup of tea, especially this time of year. I am really enjoying Taylors of Harrogate Yorkshire and Spiced Christmas teas, as well as Mighty Leaf Tea Company's Lychee Black Tea and Decaf Acai Pomegranate Black Tea. I sweeten my tea with Truvia brand stevia no-calorie sweetener, which really helps to bring out the fruit flavors in my Might Leaf loose leaf teas.

I also broke down and purchased an electric heated throw blanket. Fall and Winter weather, even here in sunny Southern California, tends to get me all flared up, so having a nice, warm blanket with gentle heat helps keep the aches and pains at bay. I've also discovered that my new blanket is quite the pet magnet, attracting both my dogs and cats to come join me for a snooze in the recliner.

So what are some of your comforts and joys? What do you fall back on when things get hectic and out-of-control? What little things help nurture you and create an opportunity to pause?

Wednesday, November 23, 2011

One of the first holidays I celebrated after finishing my leukemia treatment back in 1988 was Thanksgiving.

Back then, I was in pretty rough shape. You see, it wasn't just that I was worn out from completing four courses of heavy duty chemotherapy from January to July. I also endured a bout of acute non-A, non-B hepatitis in August, which turned my eyes and skin a sickly shade of yellow, had me puking my guts out for a week solid and then eating baby food for several weeks after that.

It was hard to believe that acute hepatitis could knock me on my ass harder than a week of chemotherapy infusions. Plus the fatigue I experienced while I was recovering from it all was just so devastating. This was the first time in my life that I felt so wiped out that I could barely do anything.

So having made it through eight months of cancer treatment and a month-long ordeal with acute hepatitis, I was bound and determined to celebrate my good fortune on Thanksgiving 1988.

Unfortunately, it seemed that no one else in my parents' home was as invested in celebrating and eating a traditional Thanksgiving meal as I was.

So despite my profound fatigue, I volunteered to make the Thanksgiving meal since apparently no one else would. It was a real struggle. I spent most of my time sitting at the kitchen table doing all the prep work. But I wasn't going to let my residual health problems get in the way of a good, home-cooked meal. (By the way, I had Hepatitis C, confirmed by a blood test when it first
came out in 1992, so no chance I could give that to them through food
preparation, in case you were worried about that.)

And since I was the one cooking, I decided what everyone else was eating.

One of my favorite cookbooks at that time was Jane Brody's Good Food Book and she had a recipe for Potato Stuffing (follow the link for the recipe.) Since my energy was quite limited, I decided this was the perfect compromise between making stuffing and making mashed potatoes. Plus reading the recipe, it sounded quite delicious to me.

Needless to say, everyone who came to the dinner table that evening hated the Potato Stuffing.

But you know what? I didn't give a turkey's butt end.

I was grateful to have, so far, beaten cancer. I was grateful I was still around to cook, even if I was physically handicapped by the aftermath of the previous nine months of dealing with a life-threatening illness and its treatment. (To be accurate, it actually was actually two: I learned much later that the acute hepatitis could have killed me too.) I came to the table with gratitude in my heart and a new appreciation for my family too.

So if they wanted to be petty and complain that they didn't get the traditional stuffing they wanted, after passing on making or even helping the girl who just had cancer and acute hepatitis make dinner, well then just screw them.

I enjoyed my dinner. I embraced my second chance at life. It was just too bad my family was so focused on the Potato Stuffing that they couldn't join me in celebrating my hard-fought personal victory over cancer.

In the esteemed words of Sandra Boynton, my favorite greeting card illustrator back then, my motto moving from that day forward was "Don't Let The Turkeys Get You Down."

In retrospect, I now know Thanksgiving 1988 was just a preview of coming attractions in regards to my health, or chronic lack thereof.

I've now perfected the art of preparing a small but still traditional Thanksgiving meal while sitting down at the kitchen table. After all, I have had the last seven chronically awesome years to practice, practice, practice. And pace. And rest. And spread the preparation over several days. And schedule lots of recovery time afterwards.

Now, when I sit down at the table to eat, I have my ever grateful husband by my side, who is always thrilled when I am able to cook for him, even when the best I can do on Thanksgiving is heat up a pre-made meal from a local restaurant or grocery store.

You know, I would have made that delicious Potato Stuffing again this year if I hadn't somehow misplaced my Good Food Book cookbook somewhere along the way from 1988 to now. I bet my hubby would have loved it! Oh well. There is always next year...

Now my personal favorite holiday by far is Thanksgiving. And I get to celebrate it in a very low-key fashion, with just my husband and our furry kids. It used to be the holiday we spent with my family, but since my parents passed away and my sibling have scattered, it's just me and the hubs now.

Truth be told, I don't mind. We can eat what we want, when we want and don't have to get all dressed up (or out of our pajamas) to do it.

I know this kind of holiday isn't possible for some of you because of family obligations. Or maybe it is and you just haven't considered this option yet. After all, you can see the family on Christmas instead, right? That's what me and the hubby do.

Either way, it's time to break out the OMA&P! Special Event form and create your plan of tackling Thursday's holiday TODAY if you haven't already. You may decide to:

Spread the cooking out over several days.

Delegate some tasks to others.

Ask guests to bring a food dish with them and have a potluck instead.

Purchase a heat-and-eat meal from a local restaurant, grocery store or gourmet food shop.

Go out to eat instead (and with this current economy, there are probably reservations still to be had.)

Don't forget to sneak in extra rest where you can and reserve the rest of the holiday weekend for lots of downtime to recover.

You are a brave soul if you decide to participate in all the Black Friday shopping madness. Although, since many stores will be open Thanksgiving Day, does that make it Black Thursday instead? I'm doing my shopping online, as usual, because I just won't have the energy to deal with crowds and chaos.

Which brings me back to that book on simplifying your life...

So are you getting a head start on the holidays? What do you do to make this season less hectic and more enjoyable? Please share the secrets to your holiday success here or over on the Oh My Aches and Pains! Facebook page.

Wednesday, November 16, 2011

I went hardcore patient yesterday and scheduled an insane number of doctors appointment (two) and medical tests (two.)

Thank goodness my husband came with me all day long too and served as my chauffeur--a task he truly abhors--as well. We got started at 10:30 a.m.; he was bright-eyed and bushy-tailed and me, well, not so much. I was praying to get through the day with the insanely small amount of sleep I was able to catch the night before. What a team we made!

I had no idea that during the course of the day I was going to be given a choice to make a real difference in the fight against breast cancer.

Yes, one of my appointments was for my yearly mammogram. If you are a well-endowed woman like me, you know that getting your yearly mammogram can be quite uncomfortable. I always get a little flare-up of my intercostal muscle pain afterwards (that's pain caused by your rib muscles.) Plus the girls aren't too thrilled about getting squished like that either. And I mean, they get really flattened...

But this year it was different too.

I discovered that UCLA is participating in a program called the Athena Breast Health Network. The researchers believe that the key to breast health is in each woman's story and they are asking us to share our health stories with them so they can get closer to true prevention and a true cure for breast cancer.

First, I was given an iPad and asked to fill out a questionnaire that took about 15 minutes. It probably wouldn't have taken so long if I knew how to use an iPad! (Yeah, I'm one of those people who don't own or ever use one!) I left my reading glasses with Robert and I didn't know you could zoom in and make the text bigger with your fingers. I also could have really used a stylus to tap on the screen to more accurately select my answers.

They asked a lot of questions about the health history of my family and myself. I don't have any female relatives that I know of who have ever had breast cancer, so perhaps that made the questionnaire easier to complete. They did ask if anyone in my family had leukemia before the age of 40. Now that was a red flag for me since I am Miss I Survived Leukemia at the age of 22. So when I turned my iPad in, I asked the research assistant present if there was an emerging link between the two. They said no.

One of the questions that they asked on the questionnaire was whether you were willing to give the researchers a small sample of saliva or blood. Of course I said yes. So when I turned in my iPad I was given a 8 1/2 by 11 laminated sheet of paper to hold that I guess was to signal the staff of my choice. I sat back down, listened to the utterances of lady next to me as she struggled with using her iPad to answer the questions and then looked around and noticed that I was the only one with that special piece of paper.

Huh?!? I thought to myself. No one else volunteered to give a sample?

For a split second I almost regretted my decision. Then I rationalized that, with my crazy medical history, I was probably not the ideal candidate for analysis. I half expected that my sample might get thrown out based on those facts alone. But after those fleeting thoughts, I decided that since I said yes, I wasn't going to back out. Especially since no one else appeared to be stepping up and joining me.

I got escorted back into the changing area and shown to a booth so I could get into a gown. My instructions were to place the opening to the front. This is, of course, my second least favorite part of getting a mammogram. The gowns are always too small for my bosoms, so I inevitable have to wear two gowns, one opening in front and one over that opening to the back, to keep the girls covered so there isn't an accidental unveiling before I get to the mammography room.

As I stepped out of the booth, I was almost handed yet another one of those 8 1/2 by 11 special flyers. I declined it, showing the nurse I already had one. They must be super excited that I volunteered, I thought to myself.

"Come in here then and let's get your sample," she said with a smile.

Luckily for me, I only had to give a saliva sample. Not that giving a blood sample would have been horrible. Heck, I am giving blood samples to the lab at least four times a year and sometimes they are taking up to 6 tubes of blood at a time. Giving saliva, in comparison, seems like a piece of cake. In reality, between trying to keep my gown in place and coaxing my chronically dry mouth into producing enough saliva, the experience was a little gawky and ungraceful. But I managed it.

I asked if they would test my sample for the breast cancer gene and was told no. Apparently I won't be hearing about any results from the sample I just gave them. But that's O.K. I get the satisfaction of knowing I am helping advance medical science...IF they find my sample usable.

Then it was on to the mammography room and the Selenia digital mammography machine. It is strange that I find it a bit comforting that something that shares the spelling of my name takes the pictures? The tech assisting me was the same one from last year. I filled the awkwardness in the room with chat about how my husband and I bought an indoor electric turkey fryer and would be using it for the first time this Thanksgiving to prepare our bird.

Four views later, I left the room promising to let her know how the turkey turned out when I come back next year.

I headed back to the booth, changed out of the gowns, put my clothes on and headed out. The whole visit took less than 30 minutes.

Sure, I'm always I little anxious about the results, but they come in the mail a few weeks later. In the meantime, I'll put on my best Scarlett O'Hara face: I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.

The real difference this time is I got to walk away feeling like, in a very small way, I might be helping one of my 'sisters' prevent or beat breast cancer because I chose to participate in a research study.

I'm not the only one making a difference. You can participate too! Simply schedule your next mammogram at one of these participating University of California Medical Centers: UC Davis, UC Irvine, UCLA, UC San Diego or UC San Francisco. Visit the Athena Breast Health Network website for more information.

Oh, and please consider volunteering to help medical research whenever you are presented an opportunity to do so.

Monday, November 14, 2011

"Enjoy what you can, endure what you must." ~ Johann Wolfgang von Goethe

Living in chronic pain and dealing with chronic fatigue are not fun. Quite frankly, these symptoms inspire a lot of beastly feelings in me. Gratitude is far removed from how pain and fatigue make me feel.

When Life Becomes Painful

The first few months, or rather the first few years, of my new life with fibromyalgia and other chronic pain disorders were pretty miserable ones. All I wanted to do is just get better. All I wanted was to leave the pain and fatigue behind...and I felt frustrated when all my attempts to do just that were fruitless and unsuccessful.

Getting to the point where I accepted that for now pain and fatigue were part of my life was an emotional, difficult process.

Finding a Better Way

But I got there because I just couldn't live in pain all the time. It was killing me, my mind and spirit, to be focused on it all the time. I saw the writing on the wall and knew that if I got fixated on my pain, I was heading down a path to a truly miserable place. A place I didn't want to go...

So as much as it went against everything I was feeling and experiencing in the moment, I started seeking out pleasant moments.

Driven to Distraction

At first my aim was to distract myself from my pain. So I put together a list of things that I liked doing and could still do despite my pain. The list was small at first and focused a lot on watching TV, reading books and listening to music.

After a short time these escapes from reality started to work and emotionally I started to feel some relief. Distraction began to ease my burden.

Then a funny thing happened. I got to a place where I wanted to do more than just escape.

Distraction was good, don't get me wrong, but I also wanted to figure out how to get more engaged in life again. I wanted to feel like I was alive and really living my life, not just trying to hide from it. Not sure how to do this, I stumbled upon a simple way to get me moving forward: I went outside into my backyard.

Reconnecting Through Nature

There truly is something magical about Mother Nature. There is also something quintessentially life affirming about sunshine, cool breezes, clouds, birds chirping and green plants surrounding you. Being out in nature really does nourishes the body and soul.

It's also amazing how much goes on in my backyard that I simply wasn't aware of until I started spending some quality time there:

I made friends with the birds that visited my yard and discovered so many different species, regulars and migrants, who visited all year long.

I was captivated by the clouds floating above and started identifying different shapes and patterns.

I started noticing the moon and its phases, especially on the days when it rose during the daylight hours.

Then I was inspired to start taking pictures of all three, which lead to learning about how to take better digital photographs.

Above all else, there was one thing that really got me engaged with life again. It was when I learned to reinvent gardening to become fibro-friendly through container gardening. There is nothing quite like the abundant satisfaction of getting your hands dirty, planting some seeds and watching the miracle of life unfold in front of your very eyes.

Feeling More Grateful

So you see, I have been able to regain a sense of gratitude in my life by focusing on what I like to do, what I can do and those things that bring me pleasure. Since my humble beginning with distraction, I have gone on to discover many more activities I can participate in that leave me feeling good despite my circumstances and my chronic illness filled life.

Today it is easy to keep a gratitude journal. With so many small but pleasurable activities and moments in my life, I can honestly write down five things at the end of the day for which I am thankful.

Beating Back the Gratitude Deficit

Most of all, I firmly believe that if you live with chronic anything, you must focus a good portion of your time and energy on things that you enjoy. This practice is essential to balancing out all the things that chronic illness takes away from you each day. Chronic illness creates a gratitude deficit that can only be remedied by redoubling your efforts to bring happiness into your life.

You simply can't feel thankful if you don't actively nourish and pamper your mind, body and spirit in ways that can sustain and fulfill you.

Some people might call what I am advocating hedonism, indulgence or luxury, but make no mistake; reconnecting with pleasure when you have chronic illness is purely about survival. It is a key tool in my chronic pain toolkit that helps me live my best life despite chronic illness.

Wednesday, November 9, 2011

I'm doing something a little different today. Today instead of Wordless Wednesday, I am featuring Warbling Wednesday so I can highlight someone I just discovered who calls herself "The Singing Patient."

I found her while I was checking out some blog posts over at HealingWell.com. (By the way, they mention me there in this lovely post too.)

So who is The Singing Patient?

Her name is Carla Ulbrich. Like us, she is a sick chick. She became ill in 2002, enduring two strokes and kidney failure, as well as anemia, hair loss, weight loss, congestive heart failure, pleurisy,
fever, migraines, and fatigue. Yikes!

Monday, November 7, 2011

Over the weekend I read a great post by the Rheumatoid Arthritis Guy titled 10 Things I’ve Learned From Living With Chronic Illness. It is a solid article, one that I could totally relate to in so many ways. But I admit when I got 2/3 of the way through it I started feeling kinda bad...

Here is what triggered that reaction:

7) No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me.

That is excellent advice. But I admit that I don't always follow this advice and I'm sort of ashamed to admit this. I mostly feel bad because it is my husband that gets the brunt of my bad behavior when I go "off the rails."

I hate it when my pain and fatigue turn me into an ugly person.

Thankfully this doesn't happen that often. Although it would happen even less if I stopped pushing myself to the limits of what I can do and paid a little closer attention to pacing myself better. And this time of year, with the holidays coming up and the weather making my symptoms worse, is a real challenge for me when it comes to pacing.

The long and the short of this is that I need to redouble my efforts in trying to make this an operating principle in my life. Because if you are married or involved in a relationship, you know how easy it is to take things out on your partner. You don't have to be sick for this to happen!

It behooves us all to remember that our partners aren't our punching bags. We need to learn mature and respectful ways to deal with our pricklier feelings. So the next time I want to let him have it, I think I'll work on taking a time out instead. Then, when I am cooled off, I can decide if I need to be angry at him or not.

Since I have been a bit remiss in this regard, I need to make it a priority to start replenishing the bank of good feelings
between us. Maybe I can start by baking him a batch of his favorite cookies and doing one of his chores for him.

I do this for the sake of our marriage and to maintain a good relationship with my spouse. I also do this because I can see how I'll be increasing my withdrawals from the bank very soon. I know that the new year is going to bring me many more periods of feeling bad when I start Hepatitis C treatment...and I am going to really need my husband's support to get through it.

So can you relate? Do you sometimes take your anger and frustration out of the people closest to you too? Is this something that has gotten worse since you started living with chronic illness?

I'd love to hear your stories and some of the things you do to mend fences with your significant others. Please feel free to share your thoughts in a comment or over on the Oh My Aches and Pains! Facebook page.

Thursday, November 3, 2011

Selena from the blog Oh My Aches and Pains! talks about her experiences connecting with others living with chronic illness on Twitter using the hashtags #fibromyalgia, #fibro, #chronicfatigue, #me/cfs,#chronicpain and #spoonie.

Friday, October 28, 2011

They say a picture is worth a thousand words, so recently I decided to draw my own illness picture.

My first thought after I viewed my completed picture? How I love Kerri from the blog Six Until Me when she says, "Diabetes doesn't define me, but it helps to explain me."

I am not my chronic illnesses. They are not who I am. But I can see the influence they have had on my life for the last 23 years, from my college major, career choice, work history and periods of disability to how I view the world, roll with the punches and want to help other people living with chronic illness too.

My second thought was another quote: she who has all the toys wins. Only it was a more dark version, something along the lines of: she who has all the chronic illnesses... I got stuck trying to figure out what the ... should be, since so far my chronic illnesses haven't killed me, just caused me a lot of problems.

Although if I let myself wax philosophical for a moment, I could probably come up with a bunch of ways chronic illness has spurred my personal growth.

But that got cut short when the real emotional impact of my picture started to hit me.

First I connected with sadness, grief and loss that hangs on the borders, out of view, around my picture. Then I felt a sense of amazement when I considered all the things I have been able to accomplish in spite of all these illnesses on my plate. Finally, as I started cataloging in my mind all the things my health care team and I are doing to manage many of the illnesses that make up my picture, I felt a renewed sense of hope that maybe, one day, some could be erased or shrunk to a more manageable size.

After all, I beat the blood cancer leukemia 23 years ago despite only having a 33% chance of survival after my diagnosis.

With so many illnesses to deal with, there has to be some smart researcher or healthcare provider out there who is going to discover a life-changing treatment for at least one of my chronic conditions.

Then I thought about all my chronic friends, the ones that I have made because our chronic illnesses have brought us together. Like me, many of them deal with multiple health challenges too. Now I am sure some of them will look at my picture and say to themselves, "Boy, am I glad I'm not her!" while others will say, "Heck, that's nothing compared to what I'm dealing with."

Whatever your reaction to my picture, that's okay with me because it isn't about comparing myself to others. It's about a new way of telling my story that I am exploring. Overall, I am both surprised and humbled by the impact my illness picture is having on me. I also feel strongly that it is something I need to share with my healthcare providers, to help them see my illnesses and the connections between them in a whole new way. That said, there are probably more lines that need to be drawn between the different illnesses, but if I included all of those lines I'm afraid my picture would become a huge, jumbled mess!

I also wonder if sharing this picture with my family and friends would help them gain a new perspective and a new understanding about my health and resulting "chronic" lifestyle.

I think in many ways I have only begun to scratch the surface. I think this picture may hold more insights and lessons for me. So I am affixing it to the back of the door to my armoire--all I have to do is open the door whenever I want to view it and ponder it some more.

If you are inspired by my example, let me suggest that you undertake this project only when you feel you are in a good place with your chronic illnesses. I admit I underestimated the impact viewing my picture would have on me. I think that if I had been in a place where I was struggling with my illness self-management I've might not have been able to manage the strong feelings evoked by this activity.

The immediate benefit to completing my picture has been feeling stronger and more confident about my ability to take on my chronic illnesses, manage their symptoms and not let them define who I am. I mean, look at my plate! I am dealing with all these health issues and living my best life despite them.

Like all my chronic friends, I am quite an extraordinary person.

Can you imagine what I would be able to do if I could cross a few of these challenges off my list?